Since the start of 2020, SRNA has hosted seven “Ask the Expert” podcasts. The goal of our “Ask the Expert” podcast series is to share with our community the latest research and information on rare neuroimmune disorders and provide an avenue for individuals diagnosed with these disorders and their family members to ask questions of experts who specialize in these disorders. These are moderated podcasts based on questions submitted by our community. The 2020 “Ask the Expert” podcast series is sponsored in part by Alexion, Genentech, and Viela Bio.
- Everything You Need to Know About Spasticity and How It’s Treated
SRNA was joined by Dr. Philippines Cabahug and Dr. Jacqueline A. Nicholas. The experts defined spasticity and tone, and they discussed the causes of spasticity. Treatment options were discussed, as well as differences between individual treatment goals. The experts described the benefit of spasticity and the timeline for when spasticity may appear after diagnosis.
- Newly Diagnosed with a Rare Neuroimmune Disorder: What You Need to Know
Dr. Olwen Murphy and Dr. Ram Narayan joined SRNA for this podcast. The experts began by discussing early symptoms of a rare neuroimmune disorder and what kind of medical care a person should seek if they are experiencing these symptoms. The experts then described the process of diagnosing these disorders and what tests should be conducted. Acute treatments, rehabilitation, and next steps were discussed. The experts talked about prognosis and what should be done if a person feels they are experiencing a relapse.
- What is neurosarcoidosis?
SRNA was joined by Dr. Michael Bradshaw and Dr. Rohini Samudralwar. The experts discussed the symptoms, diagnostic criteria, and potential causes of neurosarcoidosis. They talked about the relationship between neurosarcoidosis and the other rare neuroimmune disorders, as well as predispositions for the disorder. Acute treatments, long-term symptoms, and prognosis were discussed. Finally, the experts responded to questions from the SRNA community.
- Neuroimmune System 101 / A primer on how the nervous and immune systems work together
SRNA was joined by Dr. Kyle Blackburn and Dr. Cynthia Wang, both former James T. Lubin Fellows. The podcast began with an overview of the nervous and immune systems and how they relate in the context of rare neuroimmune disorders. The experts discussed COVID-19 (coronavirus) in relation to the immune systems of people with rare neuroimmune disorders. They then answered questions on different ways in which the immune system is activated and how different triggers for the immune system may affect someone with an existing rare neuroimmune disorder. The experts shared their research and described how to participate.
- Helping Children and Families Manage and Cope with Stress During COVID-19
SRNA was joined by Ana M. Hernandez, MS, CBIS and Lana Harder, PhD, ABPP. The podcast began with the experts giving stress management techniques for adults and children experiencing stress due to the COVID-19 pandemic. The experts discussed homeschooling and parenting, how to manage family dynamics, and ways to practice self-care.
- Latest Updates on COVID-19 and Rare Neuroimmune Disorders
SRNA was joined by Dr. Benjamin Greenberg and Dr. Michael Levy. The experts began by discussing risk factors for individuals diagnosed with rare neuroimmune disorders contracting COVID-19 and having severe cases of COVID-19 if infected. Treatment and potential vaccination options were discussed, as well as the possible effect of immunosuppressant medication on individuals diagnosed with COVID-19. The experts explained cytokine storms, inflammatory issues such as Kawasaki’s, and the possibility of neurological deficits after contracting COVID-19. Finally, the experts discussed the impact of COVID-19 on research, including research into the effects of COVID-19 on individuals with rare neuroimmune disorders as well as unrelated ongoing research studies.
- Behavioral and Psychological Changes in Demyelinating Conditions
SRNA was joined by Dr. Cynthia Wang and Dr. Lana Harder. The experts began by discussing various psychological effects that people diagnosed with rare neuroimmune disorders may experience, including PTSD, anxiety, stress, and depression. They also talked about behavioral changes that may occur, such as mood swings, changes in personality, and fatigue. Psychological and behavioral challenges of pediatric patients were discussed, as well as possible treatment and coping strategies. Finally, the experts discussed ways in which physicians and medical experts can be educated in regard to these issues for their patients who are diagnosed with rare neuroimmune disorders.
In February 2020, SRNA launched “ABCs of NMOSD”, a 10-part education podcast series to share knowledge about neuromyelitis optica spectrum disorder (NMOSD). ABCs of NMOSD brings together the latest information and research about all things NMOSD, from diagnosis and treatment to quality of life and what it’s like to live with NMOSD. Throughout the series, we invite medical experts and researchers to share the latest research and clinical knowledge with us, answer questions about the diagnostic process, biomarkers, new therapies, relapses, and managing symptoms such as pain and fatigue. We have conversations with individuals who have been diagnosed with NMOSD, their caregivers, and allied health professionals to learn from their experiences. Listeners also learn about how to advocate for themselves at school and at work, learn where to find help and support, how to navigate health insurance, and how to work with a team of medical experts. We hope this series has positively impacted those living with NMOSD and helped our community be better self-advocates. ABCs of NMOSD is hosted by SRNA, in collaboration with the Connor B. Judge Foundation, the Sumaira Foundation for NMO, and the Guthy-Jackson Charitable Foundation. This education series is made possible through a patient education grant from Viela Bio.
- I have NMOSD. Now What?
Dr. Michael Levy gave a presentation entitled “I have NMOSD. Now what?”, the first podcast in the ABC’s of NMOSD series. Dr. Levy defined NMOSD and explained the history of the disease. He discussed potential causes and diagnostic criteria. Finally, Dr. Levy discussed acute treatments, short-term expectations after diagnosis, and preventative treatments.
- Choosing a Long-Term Treatment Option for NMOSD
Drs. Benjamin Greenberg, Brian G. Weinshenker, and Stacey Clardy joined the second episode of the ABCs of NMOSD. The podcast began with an overview of the most common treatments of NMOSD and their side effects. The experts discussed the three new treatments that have been recently approved, and they discussed the differences between each treatment. They talked about factors to consider when choosing a treatment option, reasons why a person might switch treatments, and insurance implications. Finally, the experts discussed pediatric considerations for treatment, how to find research studies and trials, and supplementary treatments for NMOSD in addition to medication.
- Am I Having a Relapse?
Dr. Sean J. Pittock and Dr. Dean M. Wingerchuk joined us for this podcast. The experts began by defining relapses and pseudo relapses, and they discussed the potential symptoms and possible triggers. They discussed what someone should do if they think they may be experiencing a relapse and the tests neurologists use to identify a relapse is taking place. Finally, the physicians explained the frequency of relapses, the possibility of permanent nerve damage, and how treatment affects a person’s likelihood of relapsing.
- Understanding Clinical Trial Results for NMOSD Therapies
Dr. Michael Levy and Dr. Elias Sotirchos joined GG deFiebre of SRNA for this ABCs of NMOSD podcast. The medical experts began by explaining the steps of a clinical trial and the requirements of FDA approval. They then described the differences between types of studies and the advantages of each type. Finally, Dr. Levy and Dr. Sotirchos discussed the three new NMOSD drugs and compared the results for each trial.
- Explaining NMOSD to Others
Chelsey Judge, PhD from the Connor B. Judge Foundation and Sumaira Ahmed from The Sumaira Foundation for NMO helped explain NMOSD through their personal experiences. Chelsey told the story of her brother Connor’s diagnosis and the continuing symptoms he still has, such as fatigue and pain. Sumaira recounted her own diagnosis story and the symptoms she also experiences, including visual issues, bladder dysfunction, and fatigue. Chelsey and Sumaira then discussed how they explain NMOSD to others, including the disease mechanism and ongoing symptoms. Finally, they talked about hope for the future and promising research developments for NMOSD.
- Symptom Management: Pain
Maureen A. Mealy, PhD joined GG deFiebre of SRNA for this ABCs of NMOSD podcast. Dr. Mealy began by explaining the different types of pain that can occur with NMOSD. She discussed different treatments for pain and current research into new treatment options. She talked about TENS treatment, Scrambler Therapy, and complimentary treatments. Dr. Mealy discussed pain in relation to a relapse and how to cope with pain long-term.
- Symptom Management: Bladder Dysfunction
GG deFiebre of SRNA was joined by Dr. Philippines Cabahug. Dr. Cabahug started off by explaining how bladder function can be affected by NMOSD and the types of problems a person with NMOSD might experience. She discussed treatment options, including medications, catheterization, and Botox injections. She talked about UTIs and methods for avoiding them. Finally, Dr. Cabahug discussed InterStim, the effects of aging on the bladder, and when to establish care with a neuro-urologist.
- Symptom Management: Bowel Dysfunction
We were joined by Dr. Margaret Jones for this podcast. The podcast began with Dr. Jones giving a brief overview of the possible effects of NMOSD on bowel function and the different issues someone with NMOSD might experience. She then discussed treatment options and how a treatment plan is decided. Dr. Jones talked about digital stimulation, constipation, and the effects of aging on bowel function.
- Symptom Management: Spasticity
SRNA was joined by Dr. Jacqueline Nicholas for this ABCs of NMOSD podcast. Dr. Nicholas began by explaining spasticity and tone and how it is affected by NMOSD. She discussed causes of spasticity and why some people experience it while others do not. She described first-line and second-line treatments for spasticity and how exercise can help. Dr. Nicholas explained how spasticity can affect the ligaments, muscles, and bones.
If you have any suggestions for future podcast topics, please email us at [email protected].